Motherhood, mental illness and beyond

My pain

Today I am angry, I am heartbroken and I am self-pitying. Why? Because after almost a year of bearable pain, the last couple of days have seen me once again reduced to sitting or lying very carefully, walking very slowly while leaning heavily on my stick and trying not to sneeze, cough, laugh or do anything else that will send lightning bolts of pain through my body.

The reason for this sudden degeneration is very simple; on Saturday I bathed the children. That’s it. Usually DH does bathtime because I struggle to but on Saturday I decided that for once I was going to have the fun of doing it. And now I’m paying for it.

This makes me so, so angry. After 18 years of gradually increasing back pain you’d think I’d be resigned to this but no. I want to play with my children properly, getting down on the floor to build farms and railway tracks and roll around with them. I want to be able to sweep them up into my arms without having to steel myself against the pain, I want to run around with them playing football and chase, I want to take them for rambles across the countryside. I want to do normal mum things, I want to live my life without the constantly nagging companion that is pain.

It’s not fair. I know I sound childish and petulant but I don’t care. I don’t want this any more. I have spent more than half my life in constant pain; I had been in pain for 8 years before I had my first MRI scan, it was another 9 before I had a proper diagnosis. I’ve tried osteopathy, acupuncture, all kinds of physiotherapy, pain management clinics, cranio-sacral therapy, experimental therapies, you name it I’ve tried it. Painkillers are either ineffectual or so strong that they make me vomit constantly. My husband and children have never seen me without the spectre of pain and I doubt they ever will.

I know that I am far more fortunate than many, that have much to be thankful for and I am, believe me. But right now none of that matters because I am in pain, emotional as well as the gut-wrenchingly physical. This pain has been wearing me down a little more every day for 18 years and I don’t want it any more.  I don’t want my husband to have to help me dress and get to the bathroom on days where I can barely move, I don’t want my children to have to be careful around me in case they hurt me. I don’t want it and right now I am so furious that I could just scream all this pain and heartache at the universe. Instead I’m typing these words through angry, frustrated tears because I know that there’s nothing I can do to change this. There are no practical treatment options at this time.

And I can’t even have a proper tantrum about it because stamping my foot would hurt too much.

It’s been a while…

(For the background to this post please read Consequences).

Well, after a month or so without blogging or feeling comfortable talking openly about my mental health on Twitter, I’ve had enough. I refuse to hide any more. The woman who reported us has contacted me in order to confess; it seems that she genuinely (however misguidedly) believed that the children truly were at risk. Thankfully Children’s Services have made it very clear that they have absolutely no concerns and have indicated that they will treat any future complaints from this woman with caution.

So after having a break in order to think things through, I’m back. Through the unwavering support of pretty much everyone I know, whether online or off, it has gradually become clear to me that the importance of speaking out against the stigma of mental illness far outweighs the risk of another misguided report to the NSPCC. That this happened at all (despite the fact that I am stable, that DH and I are both in regular contact with healthcare professionals and that we have family close by who both help and support us) merely shows just how far we still have to go before mental illness is treated the same way as physical illness.

Of course, the irony of all this hasn’t escaped me. My writing about mental illness and its stigma has led to DH and me being accused of being unfit parents because of the stigma surrounding mental illness. It’s almost funny. Almost.

Consequences

Recently I wrote about being reported to the NSPCC and consequently Children’s Services in these two posts: The Letter and The Letter – part 2. If you don’t have time to read them, the short version is that the NSPCC received 2 anonymous reports from someone who was concerned that my and DH’s mental illnesses meant that our children were at risk. Children’s Services investigated and quickly concluded that the reports were groundless. That, I hope, is the end of the matter.

Except that it isn’t, not really. Although I choose to believe that the reports were made due to genuine (albeit misguided) concern rather than malice, knowing that someone has read my blog and my tweets and concluded that I am an unfit mother, DH an unfit father, has been profoundly distressing. For me it has caused heightened anxiety and stress-induced insomnia, DH is struggling with an abrupt plunge into low mood. I hope that in time these will pass, and of course the children are still entirely unaware of the whole situation and its effects, and will hopefully remain that way.

I have always prided myself on being open and honest about my mental health, both here and on Twitter. Stigma is increased by ignorance, and by speaking out I hoped that in a small way I could help reduce that stigma and the alienation that many people with mental illnesses suffer. But to have that honesty turned against me and wielded as a weapon has been a horrifying experience. I’ve never hidden the fact that I find blogging to be an extremely therapeutic way of dealing with my illnesses, both mental and physical. I have also found a wonderful support network on Twitter, where I can be honest and speak of my experiences to those who understand and empathise as well as to those who really have no understanding of what mental illness can be like. In return I’ve been able to offer sympathy, advice and comfort to others who struggle with their mental health. But I’m not sure that I can continue to do so.

Despite our swift and complete exoneration by Children’s Services, this experience has left its mark. I no longer feel safe blogging and tweeting honestly about how I am, how my day is going, how DH is. Even as I write this post I’m wondering whether it will be turned into a stick to beat me with, whether it will prompt yet another report to the NSPCC. I have lost my sense of safety, of refuge, and of course that means that I have lost my online support network. This is no trivial thing; in the past the support I’ve received from individuals online have literally made the difference between life and death. But now that’s gone. I feel watched, I feel harassed and I feel as though my honesty has endangered the happiness and wellbeing of my family.

I don’t know whether these feelings will fade as time passes but I certainly hope so. I will miss the catharsis that blogging can provide and I will miss being able to interact with the mental health community in a meaningful way. It’s been very important to me that I speak out about mental health issues and I hope that I will be able to again, but for now my voice has been silenced.

The letter – part 2

A week ago I wrote this post after discovering that DH and I had been reported to Children’s Services. I am pleased to say that today I have spoken to Children’s Services again and, despite a second complaint from the same individual after they read last week’s post, they will not be investigating further. In fact, having spoken to the healthcare professionals who regularly see DH and I, Children’s Services are confident that our children are at no risk whatsoever. Of course I’m sad that the NSPCC and Children’s Services had to waste their precious time investigating groundless complaints but in a way I think it’s a good thing; it’s far better to check out every report than for children who really are at risk to be overlooked. Social workers have a seemingly neverending and often thankless task but their work is invaluable.

The main cause of the calls to the NSPCC seem to be (and I’m quoting from what the social workers have told me) that DH and I have mental illnesses, that I am open about my mental illness, that our children have poor nutrition and most recently that we have “so many bad days” that we are “on the dole”. Now, our children are obviously well-fed and being on benefits is no crime, despite being embarrassing or shaming to admit to at times. Equally, having a mental illness isn’t a crime but there is a lot of stigma and many people don’t really know anything about it. That’s partly what prompted me to start blogging, because I was tired of hiding my mental illness when I didn’t feel it was necessary to hide my physical illness.

I will admit that this incident has made me wonder whether I should continue blogging and tweeting so honestly, or whether I should stop. After careful consideration and discussions with numerous people I’ve decided to carry on as normal. If nothing else this whole sorry episode has demonstrated just how much ignorance there is about mental illness, and if I can help people to be better informed then that can only be a good thing.

To the person who reported us I would like to say this:

I’m sure that you’re happy to hear that my children are well-cared for and not at risk. It’s a shame that you felt unable to approach DH and I before speaking to the NSPCC; we’re nice people and can take criticism, especially if it comes from a place of genuine concern.

If you would like to learn more about mental illness you can access some great information at Time To Talk and Mind, while the Mental Health Foundation has a good explanation of stigma here.

I hope your mind is now at ease as far as my children are concerned. Yours,

Sam.

The letter

For the last 12 days DH, the children and I have been on holiday. We’ve had a wonderful time staying with DH’s family and having lovely days out. Today we came home and once we’d brought everything in from the car I sat down to check through the post for anything that needed urgent attention. And there it was.

Children’s Services have received a referral from the NSPCC. The referral has raised concerns for your children’s welfare. Please contact the Children’s Access Point on the above telephone number so we can discuss the matter further. You will need to speak to the duty social worker.

Hands shaking, I showed the letter to DH before shutting myself in the bedroom to make the call. The duty social worker was very pleasant and explained that someone had contacted the NSPCC anonymously to report that they were concerned about my children’s welfare. Apparently the complaint was very detailed but of course the social worker couldn’t tell me too much in case it helped me identify who the individual was. Which is fair enough. What he did say, though, is that this person was very concerned because a) DH and I both have mental health issues, b) I am open about my mental health “without considering the impact it may have on the children’s welfare”, and c) because the children suffer from “poor nutrition”.

I have to admit, I find the third one mildly amusing. Anyone who has seen how healthily my children eat and how much they can pack away (second helpings are common and third helpings have been known on occasion) knows that they’re definitely not malnourished or lacking in any kind of nutrition. I’ll be honest, a lot of the time they eat better than DH and me! They’re both slender but full of energy, and no-one in a position of responsibility (doctors, teachers, children’s centre staff etc) has ever expressed any sort of concern about their wellbeing.

I gave the social worker a brief summary of DH’s and my mental health: our diagnoses, that we’re both stable on medication, that we both see our GPs regularly and that DH sees his psychiatrist every month as well as going to support groups each week. I explained that we both have supportive families who we see regularly, as well as some very supportive friends. I gave the social worker the contact details for our GPs and DH’s psychiatrist, and we both gave full permission for them to tell Children’s Services whatever they need to know.

Now, a few hours later, the shock has worn off and to be completely honest, I’m not angry so much as sad. I’m sad that someone who seems to know us had concerns about our children but didn’t talk to us about it. I’m sad that once again the stigma that surrounds mental illness has touched our lives; would the person have called the NSPCC about my physical illness, which actually has far more of an effect on the children? I doubt it. I’m sad because the comment about the children’s nutrition makes it seem as though this is a malicious complaint rather than someone who’s genuinely concerned but perhaps a bit misguided. But most of all I’m sad because Children’s Services are now wasting their precious time investigating me and DH instead of spending it helping children who are actually being abused, neglected and ill-treated.

I have absolutely no intention of keeping quiet about mental illness. If anything, this has made me even more determined to speak up about it. I disagree that being open about mental illness will have a negative impact on my children; I think that hiding our illnesses and lying about them would be far worse. Particularly when there is evidence to suggest that depression and bipolar disorder may be inheritable! The children aren’t aware of mental illness yet but as with everything else we will answer the children’s questions honestly and at an age-appropriate level when they’re asked. And we will continue to teach them to accept everyone regardless of illnesses, disabilities or any other differences.

I’m confident that after the investigation has run its course the complaint will be dismissed. Of course there’s still a small voice whispering “But what if they decide to take the children anyway?” in the back of my mind; this is precisely the kind of situation that my anxiety is centred on but I’m doing my best to ignore that. My children are happy, healthy and well looked after, and I know that social workers aren’t the big bad child-snatchers that they’re often suggested to be. I hope that this will be resolved quickly, and that whoever called the NSPCC can rest easy knowing that my children are absolutely fine.

Recover or else?

This morning I read this news story with a mixture of exasperation, anger and fear. The British government, having already made life close to unbearable for disabled people, are now turning their attention to another extremely vulnerable group: those with mental illnesses. It seems that spending 15% of the welfare budget on the sick and disabled is unsustainable (but apparently spending 21% on low income workers and 42% on the elderly isn’t a problem). So government ministers have come up with the idiotic brilliant idea of forcing people with depression or anxiety to attend therapy, and stopping their benefits if they’re unable to.

In response to this article I dashed off several quick objections to this proposal:

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It’s proven very popular on Twitter, having been retweeted over 200 times now, but now I’d like to explain these points properly.

1) You can’t force people into therapy and then expect them to get anything out of it. Whether it’s cognitive behavioural therapy, talking therapy or anything else, the individual has to be willing and able to undergo what can often be a traumatic and upsetting experience. Forcing someone who isn’t ready to go through this would be highly counter-productive, exacerbating the problem and further alienating the ill person.

2) No-one will trust a therapist who they know is focused on declaring them fit to work, come what may. Just as you wouldn’t automatically trust someone you met on the street, you don’t automatically trust a therapist. A relationship has to be built, slowly and cautiously, and trust must be earned. If you know that the person you’re supposed to be baring your soul to isn’t focused on what’s best for you but only on telling the government that you can work, that trust will be non-existent. In addition, the basic principle underlying psychotherapy is that clients give voluntary (ie not forced), informed consent; would therapists even be allowed to treat patients who attended under duress?

3) In most areas there’s a long wait for talking therapies and CBT, often a year or more. Are the government going to conjure therapists out of a hat as though they’re well-qualified rabbits? When funding for mental health services have already been drastically cut, how can thousands more people be forced into a system that’s already bursting at the seams?

4) “We know that depression and anxiety are treatable conditions”. Wrong – they *can* be treatable conditions. There are all kinds of depression and anxiety and some of them are permanent. Whilst most of the time depression and anxiety can be transient illnesses, passing with the right treatment, for some they are merely manageable with treatment and don’t go away. Being forced to attend further therapy is only going to make these illnesses worse.

5) “Cognitive behavioural therapies work and they get people stable again”. Wrong again – they *can* work. For some people CBT is an utter waste of time, as I can attest. There is no panacea for depression and anxiety, no one-size-fits-all cure. If there was then we wouldn’t be having this discussion!

6) Most of the welfare budget actually goes to the working poor through tax credits. Instead of targeting the ill and vulnerable yet again, why not legislate for companies to pay a living wage instead of having to top up incomes via welfare? As I wrote at the start of this post, only 15% of the welfare budget is paid to those who are sick and/or disabled. Why aren’t the government ensuring workers are paid a proper living wage, instead of having to pay 21% to people who work but are paid so little that they’re still impoverished? It couldn’t possibly be because vulnerable groups are easier to target, could it? Or perhaps ministers have fooled themselves into believing their own “scroungers” rhetoric.

7) Oh and let’s not forget the billions of pounds lost through legal tax avoidance, why not close that loophole while they’re at it? The Telegraph article states that “Estimates based on government figures suggest the state spends up to £1.4 billion a year – more than £3.5 million per day – on ESA for these claimants with mental health issues”. But other government figures have shown that over £5.1 billion a year is lost through tax evasion. The government is targeting the vulnerable instead of those who think they’re too good to pay taxes.

Many ill and disabled people have died within 6 weeks of being declared fit to work by ATOS, the company contracted by the UK government to reduce disability payments. How many more will die if this ill-considered idea is actually put into practice? Sadly we may soon find out, as pilot schemes are being rolled out in the near future.

One last thing. You are only one illness, one accident, away from becoming disabled yourself. 1 in 4 people in the UK will have a mental illness at some point in their lifetime. Although this government’s barbaric policy of targeting the ill and vulnerable may not affect you today, there’s no guarantee that it won’t tomorrow.

Trigger warning: suicide

Last week this image caused a bit of upset on Twitter:

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It’s from the American Foundation for Suicide Prevention, a non-profit organisation that seeks to understand and prevent suicide through research, education and advocacy. They also aim to help those affected by suicide. It seems to be a good organisation with good intentions, but out of context their image (originally posted in 2012) raised some hackles in the British mental health community. Why? Because it removes the focus from the suicidal person and it seems to feed into the “suicide is selfish” idea. This belief is unfortunately common. Killing yourself is often seen as selfish, cowardly and weak. It’s yet another part of the stigma that surrounds mental illness.

I recently shared this image (from Boggle the Owl)  on my blog:

image

The response was overwhelming. So many people contacted me to say that it had made them consider suicide and/or mental illness in a different light. I’m so glad, because it did the same for me when I first saw it. Despite having been mentally ill since my early teens I too had bought into the “suicide is selfish” rhetoric, and realising that my suicidal urges didn’t make me selfish was a huge step. It lightened the load. Because in my experience, that’s what suicidal urges are, an enormously heavy burden that weighs you down. And it’s one that is incredibly difficult to he honest about; during my most recent crisis, in February/March this year, I hid my increasingly suicidal thoughts and feelings from almost everyone. The previous times I had felt suicidal, and the one time I seriously attempted to kill myself, absolutely no-one knew.

There’s a lot of ignorance about suicide. Firstly there’s the idea that people who talk about killing themselves will never do it, when in fact most people who kill themselves have told at least one person that they want to do so. Then there’s the suggestion that telling someone you’re suicidal is just attention-seeking. Can you imagine that? Your world has shrunk to the confines of your own mental torment, your existence is so unbearable that you’re considering ending it, you pluck up the courage to tell someone how you’re feeling because you know you need help, you’re drowning in pain and BAM! You’re dismissed as attention-seeking.

Equally as bad is “You owe it to your family/friends/hamster to stay alive” and “It’s a permanent solution to a temporary problem”. I’ve had mental illnesses since my early teens – what’s temporary about that? While for some people depression and suicidal thoughts may be relatively fleeting, for many they are a recurring or constant problem. Imagine 2, 5, 10, 20 or more years battling your own mind, your mental pain, every single day. Or maybe it’s physical pain and illness that you’re fighting against. While holding down a job, bringing up children, maintaining a facade of normality for the outside world. It’s exhausting. And being told that you “owe it” to other people to keep yourself alive? No. Just no. That’s implying that they are more important than you, that their feelings trump yours and that your anguish doesn’t matter. All that matters is how your death will make others feel.

Lastly there’s the nasty sentiment that people who jump in front of trains or off motorway bridges are just a selfish inconvenience to others. Let’s think about that. Another human being, someone who loves and is loved just like you, has found their life to be so unbearable that they saw no alternative to ending it. Their pain was so immense that it blocked out all other thoughts. And you’re complaining because your journey has been delayed?! That’s the true act of selfishness, to me. Seeing someone else’s pain, suffering and death only in the context of how it affects you.

So no. Suicide isn’t a selfish act. It may be a desperate one but it is not selfish.

For further understanding please read these incredible posts from BipolarBlogger: Count no blessings: How a suicidal mind works and Ten things not to say to a suicidal person.

If you are suicidal or know someone who is and you need support, please check out the “Want to talk to someone?” bar at the top of the page.

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